Caring burden of cohabitants living with partners suffering from chronic obstructive pulmonary disease or dementia by Bente Nordtug

Background

The prevalence of chronic obstructive pulmonary disease (COPD) or dementia is expected to increase in the future. At the same time, there will be relatively less nursing homes and health personnel available. Accordingly, close relatives may have to carry more responsibilities for care in the future.

Objectives

The aim of the study was to explore the caring burden in relation to two chronic illnesses, COPD and dementia, as well as investigating the relationships between caring burden, social environment, and characteristics of the ill persons and their cohabitants.

Methods and materials

Home-dwelling cohabitants with partners who have either COPD (n = 105) or dementia (n= 101) participated in this cross-sectional study. The questionnaires covered perceived social support (SSS), caring burden (RSS), General Health Questionnaire (GHQ-28), neuroticism (EPQ-R), and externality (LCB).

Results

Considerable differences emerged when comparing the two illnesses. The COPD group primarily used technical remedies such as professional aid in their homes, while the dementia group used more and diverse types of aid. In the COPD group, 37% reported social withdrawal from family and friends versus 63% in the dementia group. The older the caregiver, the more support would they tend to perceive.

Aggressive behaviour in the ill partner was related to less perceived social support and a higher caring burden. When the ill partner could only be left safely alone for a short time and when the level of self-care in the ill partner was low, the caring burden increased. It also increased when the caregivers perceived less affectionate support and had less positive social interaction from their partners, relatives and friends, and when family and friends withdrew. Those utilizing more professional aid also perceived a higher caring burden. Males received more professional aid than females.

In addition, there were gender differences in what influenced the caring burden. For females, the caring burden went up when family and friends withdrew, and likewise if they received less affectionate support and had less positive social interaction with their partners, relatives and friends. For males, the caring burden increased when they had fewer hours on their own and when more family and friends were helping. On the other hand, the caring burden of male caregivers went down when they had a higher number of people who they could ask for practical help when in need.

According to the GHQ–28, 30.5% in the COPD group and 58.4% in the dementia group qualified for psychiatric caseness. Females were seemingly more frequently affected mentally than males. The dementia group reported more externality, thereby implying that they felt their lives were less controlled by themselves. High levels of neuroticism in the caregivers of partners suffering from dementia were related to poor mental health and a higher caring burden.

Conclusions

The knowledge derived from this study may contribute to more targeted health care in the future for the homes in charge of patients with COPD or dementia. It may be useful to consider that the COPD group perceived more social support, reported less caring burden and better mental health than the dementia group. In addition, it seems advantageous to take into account gender differences. In both groups, but particularly for couples wrestling with dementia, it may be seen as a public challenge to counteract social withdrawal by family and friends in relation to those who have chronic diseases